Parkinson's
“Within weeks I was floored. I couldn’t get off the settee, couldn’t get out of the bath, couldn’t get out of the bed, couldn’t do absolutely anything to the stage [where] one Saturday I had to call an ambulance because I couldn’t move from here.”
Since her diagnosis in 2019, Gillian Jones has only been medication free once, and as she just described, unfortunately the symptoms of her Parkinson’s were too bad for her to continue without.
Parkinson’s is a progressive neurological health condition that can cause a very wide range of symptoms, and few people with Parkinson’s will have the same experience. Three of the main symptoms, however, are a tremor (shaking), muscle stiffness/rigidity and slowness of movement.
There are different types of Parkinson’s, all covered by the umbrella term ‘parkinsonism.’ According to Parkinson’s UK, around 153,000 people live with Parkinson’s in the UK. Gillian’s type is idiopathic, meaning it was not brought on by a stroke, drugs or anything else – the cause is unknown.
Gillian and I sat together in her living room, surrounded by framed photos of family members on the walls. She explained to me how she wanted to do this interview because she knew how important it was to spread awareness about Parkinson’s, and the impact it could have on others with the condition.
Gillian’s first experience with Parkinson’s wasn’t actually at her own diagnosis, but rather that of her stepfather’s. When he was diagnosed, Gill wanted to be able to care for him to the best of her ability, so did a lot of research into the condition.
“I was also an advocate on Facebook, people would message me for advice... I was very involved with it.”
Unfortunately, Gillian’s stepdad died during the Covid pandemic, after losing the ability to swallow and experiencing internal bleeding.
While caring for her stepfather did give Gill a good understanding of Parkinson’s, which could be seen as helpful for managing it, it instead made the diagnosis more difficult, as she had already seen the effect it can have.
“The thing that worries me is the swallowing, because my dad died of... Well, he basically choked to death.”
As Gillian emphasised, however, symptoms of Parkinson’s differ from person to person.
“The thing that I find upsetting and annoying is, people will compare you to people that have got Parkinson’s, and they’ll say, ‘oh well the person I know hasn’t got that symptom or the person I know doesn’t have that pain.’ Now that doesn’t help anybody, because we’re all different.”
“The symptoms are, for myself, really bad balance, stiffness all down the left side, toes can curl, fingers can curl, tremors, memory loss, depression. It brings a lot with it, you know, not just the fact you can’t balance or, you know. There are certain things I’ve not been able to do. I can’t tie my own hair up, I can’t wash my own hair, I can’t carry anything.
“That’s how I knew it was a neurological issue, because my brain wouldn’t send signals down the left side of my body.”
Despite Gill knowing it was likely to be a neurological condition, getting diagnosed took a long time, with doctors initially thinking it was a problem with her bones.
Six years on from her diagnosis, Gillian now manages the condition with medication, exercise and help from family. The medication she takes is mainly in the form of tablets, and she must take them at specific times during the day, at 8am, 12pm, 4pm and 8pm.
Gillian also takes Sertraline, an antidepressant. Nearly half of all people who have Parkinson’s also suffer from anxiety and/or depression. This can be because of the stress and worry surrounding the disease for some, and for others can be directly caused by the physical changes in the brain.
“All of it has been hard, it's been very, very depressing.”
One thing Gillian has found to be hugely beneficial, however, is exercise.
“He [Gillian’s son] pays for me to have a personal trainer twice a week.
“Exercise is a must because it can slow down the progression, if you have a daily routine of exercising. My programme’s all about my balance and trying to get strength in my arms, in my legs, trying to build me up to get a bit quicker than I am.
“I got a bike during the pandemic; I go out every day on my bike. Any form of exercise is gonna help you massively. You have to exercise.”
Gillian told me how getting diagnosed with Parkinson’s, understandably, can be a really scary and difficult time, with a lot of changes, trial-and-error with medication and adapting to a new way of life.
Her main piece of advice for those just getting diagnosed is to check out and contact Parkinson's UK, a charity that offers loads of support, from information to a helpline. Gillian explained how this can be particularly helpful as NHS appointments can be hard to get and far apart, even with the condition.”
“They [the charity] have nurses that can phone you, [who can] tweak your medication.
“Without Parkinson’s UK I don’t know if I’d be here and that’s the God’s honest truth.”
She also stressed the importance of going to classes offered by the NHS.
“Make sure you get involved in absolutely everything offered, because it might not make sense at the beginning but it’ll all fall into place in the end. The quicker you get involved, the more it’ll become part of your routine, and you won’t feel like you’ve just stepped into a brand-new world of how do I do this how do I do that.”
While it may seem an odd question, I asked Gillian if there have been any silver linings of her diagnosis.
“I don’t really think there’s a huge silver lining because there isn’t one at the end of it all.
“[But] for me I’d say the silver lining was meeting likeminded people and having chats with them about, maybe not Parkinson’s, but MS and seeing their struggle or their silver linings.”
Thank you for this wonderful blog and to Gillian for sharing her story. It is very informative.